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What are your thoughts on Dale Bredesin M.D. protocol and are there any of you involved with his regimen and testing/
Canada111
Posted: Saturday, January 14, 2017 11:18 PM
Joined: 8/22/2016
Posts: 263


Here is a video of Dale Bredesin discussing the 3 types of Alzheimer's. In my analysis I am type 3 as I presented with depression before memory loss and symptomatically fit that type very closely. He really understands the deficiency in the way the disease is dealt with in the top teaching hospitals and is a tremendous medical pioneer, in my opinion. I am very curious to hear your thoughts on this. He seems to offer some hope. 

https://www.youtube.com/watch?v=6D5aA_-3Ip8#action=share 


Canada111
Posted: Sunday, January 15, 2017 11:23 AM
Joined: 8/22/2016
Posts: 263


Michael, Just my opinion but I think you were remiss not to enroll in his program, especially with it being free for you. You have a terminal disease. Is your doctor on the level of Bredesen?

 Look at his vitae 

http://www.eastonad.ucla.edu/about-us/faculty-and-staff/item/bredesen-dale-e-md 

Do you have that much confidence in your doctor that you would not try to advance science and try to help yourself in the process? What if Bredesen helped you? From what you have told me, you have had some very very serious health issues co-morbid to or directly contributing to early onset Alzheimer's. What would you have to lose? Has your neurologist and your doctors really offered you anything to make you better? I have spoken to you about what you eat and diet and know that that's not a big concern of yours. Have you ever given any thought to the correlation between what you have put into your body and what is your state of health? You take multiple drugs and have Alzheimer's. Could there be a correlation between your genetic profile and your diet and who knows what else that hasn't been analyzed? Do you consider anything outside the box or are you firmly entrenched in the no cure theory? I saw many young men die of AIDS in the 1980's and 90's. Now there are people living long with that disease. If people like you who are vocal representatives for the rest of us, don't try and really expand of the research beyond the conventional trials, how will progress be made?  I'm really disappointed to hear that you refused to offer the rest of us some hope or to truly refute what Bredesen is offering by not participating in his protocol. Maybe it's a question of discipline and changing your lifestyle dramatically. It would have required eating completely differently than you do, and following a protocol that is completely different from your current lifestyle. Maybe taking a bowl of pills is easier. I understand this because I am finding changing my own patterns very very hard, but if I had the opportunity to participate in Bredesen's protocol for free, I would jump at the chance. 


alz+
Posted: Sunday, January 15, 2017 2:26 PM
Joined: 9/12/2013
Posts: 3608


will watch video later.

everyone has the right to live out their life as they see best for them

I have earned some new things recently and am adding vitamin D, the B complex, and taking a supplement made from fermented something.

have a Packer game to watch in an hour, will watch video tonight though.

this place is to share fresh ideas, and if you find something that makes you function better why wait for science to deem it worthy and the drug companies to release it in expensive pill form?




alz+
Posted: Sunday, January 15, 2017 9:10 PM
Joined: 9/12/2013
Posts: 3608


I had watched that video and forgot it.

before I was diagnosed I used t take a sublingual B complex and it helped with everything, then I was told I could over dose on Bs and I quit.

used to take D but told could be harmful and quit. 

My diet does affect me but not right away, meaning if I stay mostly vegetarian and salads and fruits, fish, little sugars I feel alittle better.

But cognitively no medication or exercise regime or anything has enabled me to improve cognitively like the cbd oil.

Rick Simpson who popularized the oil as a medicine responded to a question about its use in ALZ and said to take a small drop and wipe it on white paper. If it streaks green it has too much chlorophyll. It should look dark, thick like motor oil. One of mine was greenish so will go to stronger next time we order.

It is not slowing the progression to a stop, but it works fast, no side effects, makes life simpler and yet it not being seriously researched.

I had a mycobacterial pneumonia that killed half of those of us who got it in a small town when I was 30. I never really recovered and think it is part of the cause of my dementia. 

If it has not been stopped since written history who knows? I doubt there will be one cure. everyone's illness will have to be adjusted for them so do what helps  now.


Lane Simonian
Posted: Monday, January 16, 2017 12:30 AM
Joined: 12/12/2011
Posts: 5001


I have always liked these two sentence:

The inflammatory mediator peroxynitrite, when generated in excess, may damage cells by oxidizing and nitrating cellular components. Defense against this reactive species may be at the level of prevention of the formation of peroxynitrite, at the level of interception, or at the level of repair of damage caused by peroxynitrite.

There are many vegetables, fruits, spices, vitamins, etc. that will accomplish the first (inhibiting) the formation of peroxynitrite and weakly accomplish the second (intercept peroxynitrite), and can thus reduce the risk of Alzheimer's disease and slow down its progression.

We conclude that higher adherence to the MeDi [Mediterranean diet] is associated with a reduction in risk for AD.

Adherence to the Mediterranean diet (MeDi) may affect not only risk for Alzheimer disease (AD) but also subsequent disease course: Higher adherence to the MeDi is associated with lower mortality in AD. The gradual reduction in mortality risk for higher MeDi adherence tertiles suggests a possible dose–response effect.

I believe that most (perhaps) all aspects of the Bredesen protocol (healthy diet, exercise, vitamins, antioxidant supplements, etc) does the same thing.

Only a relative few plants contain compounds that actually reverse part of the damage done by peroxynitrite thus partially reversing some aspects of Alzheimer's disease.  CBD oil contains a number of these compounds.

The neuroprotection by THC and CBD was because of attenuation of peroxynitrite.


Lane Simonian
Posted: Monday, January 16, 2017 12:40 AM
Joined: 12/12/2011
Posts: 5001


While looking for something else, I came across this.  It probably does not work as well as CBD oil from marijuana but it combines cannabidiol from hemp with a number of other compounds that are antioxidants.

From The Ananda Apothecary, cannabidiol CO2, with CO2 oils of Turmeric, Ginger and Lavender, in MCT Coconut oil, with Rosemary antioxidant added to preserve freshness. CBD DeFlame contains 1mg CBD per every two drops.*

CBD, or Cannabidiol, has been researched for anti-inflammatory activity. We've blended CBD with essential oils traditionally used, and researched, for these actions. 

Cannabidiol (CBD) is a naturally occurring constituent/cannabinoid of the hemp plant. It is the most abundant non-psychoactive cannabinoid in hemp/cannabis. Our CBD oil extract is a full spectrum extract of a Hemp strain of Cannabis sativa. Hemp is ideal for cannabidiol (CBD oil) extractions as it is naturally high in CBD and low in THC. Because of the extraction from legally grown and extracted Hemp, it is legal for shipment to all 50 states.

Most preclinical studies with cannabidiol utilize synthetic, single-molecule CBD produced by biochemical laboratories for research purposes – whereas whole plant CBD-rich extractions typically include trace amounts of THC and more than 400 other compounds, which interact synergistically to confer a holistic “entourage effect” so that the therapeutic impact of the whole plant is greater than the sum of its parts.



alz+
Posted: Monday, January 16, 2017 7:14 AM
Joined: 9/12/2013
Posts: 3608


hi Lane!

if someone is going to use cbd oil it should be from a safe source with the amount of thc listed.
if the oil when smeared on white paper is greenish, it has too much chlorophyl. it should smear dark brown like motor oil.

It should be made from Indica cannabis plants, not waste from hemp oil production.
we have an endocannabinoid system throughout our bodies, only discovered in past 20 years. 

If a person tried the oil they know if it works within 10 minutes.

The cbd oil with high THC is something one has to take in VERY small doses until the body's system adjusts to it. it took me 3 weeks of tiny dots of that oil to get to taking a rice grain size.

There are boards where people discuss their use of it for Alzheimer's and because we have ALZ they ask the same questions over and over. it is easy for me now because Keeper will put a drop on coconut oil (to help it go down) on a tiny spoon for me.

Interested in the combo oils, I think each person has certain things with dementia that are most problematic, and I believe the plant the oil comes from makes a difference i.e. indica vs sativa.

Colorado dispensaries will likely have done just this by next  year as demand is growing and people are able to give feedback.

Made me happy to see you here this morning!

Lane Simonian
Posted: Monday, January 16, 2017 9:29 AM
Joined: 12/12/2011
Posts: 5001


With experience comes wisdom.  I wish that I had kept better track of all the advice that has been given on CBD oil by you and others on this board.  One good thing though is that when someone asks questions about doses, strains, ratios of cannabidiol to THC I know that someone else has an answer.

Ananda is a reputable aromatherapy company, but I am not sure how much research they have done on this product.  Certain essential oils can only be ingested in very small amounts and others should not be ingested at all (not the ones in this product, though). The people who developed this product might know the safe dose.

https://www.davidwolfe.com/ingesting-essential-oils-is-it-safe/

In theory, the more combination of compounds that are strong antioxidants the better. But that may or may not be the case.

Off topic: you had a good Packers game to watch.


Lane Simonian
Posted: Monday, January 16, 2017 12:00 PM
Joined: 12/12/2011
Posts: 5001


I like this one: simple, clear and to the point:

Alzheimer's disease (AD) is the most common neurodegenerative disorder, characterized by progressive loss of cognition. Over 35 million individuals currently have AD worldwide. Unfortunately, current therapies are limited to very modest symptomatic relief. The brains of AD patients are characterized by the deposition of amyloid-[beta] and hyperphosphorylated forms of tau protein. AD brains also show neurodegeneration and high levels of oxidative stress and inflammation. The phytocannabinoid cannabidiol (CBD) possesses neuroprotective, antioxidant and anti-inflammatory properties and reduces amyloid-[beta] production and tau hyperphosphorylation in vitro. CBD has also been shown to be effective in vivo making the phytocannabinoid an interesting candidate for novel therapeutic interventions in AD, especially as it lacks psychoactive or cognition-impairing properties. CBD treatment would be in line with preventative, multimodal drug strategies targeting a combination of pathological symptoms, which might be ideal for AD therapy. Thus, this review will present a brief introduction to AD biology and current treatment options before outlining comprehensively CBD biology and pharmacology, followed by in-vitro and in-vivo evidence for the therapeutic potential of CBD. We will also discuss the role of the endocannabinioid system in AD before commenting on the potential future of CBD for AD therapy (including safety aspects).


The_Sun_Still_Rises
Posted: Monday, January 16, 2017 4:12 PM
Joined: 7/24/2015
Posts: 3020


Canada111,

I could no wait get home report back you what my doctor say this.  I had sent her the link video last night.  She an integrative doctor who in this genetic nutrient field and (btw she say the next functional med conference is on neuroplasticity!).  She watched the whole thing, like I did (rather than simply assume what it about)....and she eagerly brought it up me when I get there....she was AS excited his science as I was other day! 

And she no just any ol run mill doctor....she one those rare few who have a thinking, inquiring brain and she be solving things. 

She say the science sound...and she had already printed a boat load his things, and she went right up over my head what she say.   In any event, she excited and she so excited and so believe in this....that she going figure out and list gether the tests we need. 

Everything I had said here this I was able say her....and she agreed all that.  When I pointed out parts the video....she knew exactly what I referring....so I know she real watched it all way...this was her genuine response. 

Just thought you'd want know.

<3


Lane Simonian
Posted: Tuesday, January 17, 2017 11:20 AM
Joined: 12/12/2011
Posts: 5001


I watched the Bredesen video, and I am about 90 percent on board with what he is saying. As the disease progresses, treatment requires the best antioxidants and that is where antioxidant treatments have fallen short in the past because the best antioxidants were not being used.

An excellent comment by feudman on the caregiver's forum got me thinking.  Maybe you don't want to combine ingesting essential oils (which is less effective and much less safe than aromatherapy) with CBD oil maybe you want to vaporize the CBD oil.  As noted in the video, the closest route to the brain is through the nose.

The annoying: only 6% of CBD oil gets absorbed?

The trouble is that your liver is very good at breaking down CBD – so good that if you swallow CBD, only about 6% of the amount you took reaches your brain.

What about smoking?


When you smoke something, it reaches your brain quickly without passing through your liver. That’s good for CBD – its bioavailability jumps from 6% when eaten to 31% when smoked. The problem with smoking high-CBD pot (or any pot) is that you inhale all kinds of toxins and carcinogens, as well as THC.

Can you upgrade your smoke?

The most Bulletproof option is to vaporize pure CBD oil. You get:

  • Higher bioavailability than you would if you were taking CBD orally
  • Little to no THC
  • Almost none of the toxins that come from traditional smoking

It’s still difficult to control dose when vaporizing CBD extract, but if you do a little math you may be able to figure it out. You’ll want a vaporizer made specifically for oils.

 

A little THC may actually be good for some people with Alzheimer's disease.  Dose would be difficult to determine, but just like the essential oils with aromatherapy, a bit of vaporized CBD oil goes a long ways.


The_Sun_Still_Rises
Posted: Tuesday, January 17, 2017 6:34 PM
Joined: 7/24/2015
Posts: 3020


Just wanted add, I just spoke with another functional doctor I long time friends with and highly respect opinion of....and she say that she know of him and that he the real deal.  Apparently he well respected in the functional and integrative medicine community. 

Integrative and Functional Medicine, as many you know, is no like typical doctors who just rx symptoms...they use medical knowledge how body works treat the cause, rather than just medicate the symptom.  Making a comparable from the recent Dr. Allan Power video, regular doctors rx would treat the cough whereas Integrative and Functional would treat the pneumonia. 

For what it worth.

<3

 


Lane Simonian
Posted: Tuesday, January 17, 2017 11:12 PM
Joined: 12/12/2011
Posts: 5001


I don't doubt for a second that he is on the right path.  

I remember reading years ago that removing mercury in some children with autism helped if it were done early enough.  That did not make sense to me at the time, but it is beginning to make sense to me now.  Removing the causes of oxidative stress is less effective once the damage done by oxidation has taken hold.  Then it is necessary to remove the oxidant and reverse as much of the damage that it has done as possible.

Here is a very recent overview of antioxidants for Alzheimer's disease.

Ninety-seven articles were involved in the present study. Several phytochemicals seem to slow down AD onset, delay disease progression and let recovery through targeting multiple pathological causes by anti-cholinergic, antioxidant and anti-inflammatory features.

And to match this with an older study.

The inflammatory mediator peroxynitrite, when generated in excess, may damage cells by oxidizing and nitrating cellular components. Defense against this reactive species may be at the level of prevention of the formation of peroxynitrite [slow down AD onset], at the level of interception [delay disease progression], or at the level of repair of damage caused by peroxynitrite [allow recovery].

The question is which antioxidant compounds best partially reverse the damage done to the brain.  This is the best answer I can give at this point: CBD oil (cannabidiol, THC, terpenes), aromatherapy with essential oils high in eugenol--a terpene--such as clove, bay laurel, lemon balm, and rosemary, Korean red ginseng (ferulic acid, syringic acid, vanillic acid, p-coumaric acid, and maltol).  Best natural compound for neuropsychiatric problems in dementia: feru-guard (ferulic acid from Angelica archangelica and rice bran oil).  Are there better answers?  I hope so.


The_Sun_Still_Rises
Posted: Wednesday, January 18, 2017 1:58 AM
Joined: 7/24/2015
Posts: 3020


You will have excuse me, as I sort of mathematical in my thinking...

But, I am a firm believer that it you can identify the pathway by which something happens, then the solution also becomes self evident. 

He appears have identified the exact pathway by which the cells brain create Alzheimer's.  He also appears have identified a whole host the genes that are flipped, do this.  <---that ASTOUNDING!

In simple terms...our body an endless recycling plant and our cells have 2 states being: 1 - in a state of endlessly repairing and renewing itself; or 2 - in a state of self destruct. 

The state in which a cell finds itself, the condition precedent, will determine which the cell does. 

Alzheimer's is a fairly global self-destruct sequence the brain.  Therefore, those with Alzheimer's have the condition precedent flip the global cells their brain self destruct.  Also, therefore, ANY premise that we make WHY....have include ALL who have it in order for it be accurate.

The solve for this premise is simply find the way create the condition precedent flip the brain back repairing and renewing itself. 

And just like I said re Lyme disease (which a living organism, and as such *something* ought be able kill it), that when you find that thing that kill Lyme...it will kill it dead in everyone....

...I don't think the answer is so simple (nor do I think it will be particularly hard if you can sift the wheat from the chafe - which increasingly hard me), because if it were simply being healthy - many very healthy people get Alz.  If it were that simple, also, everyone unhealthy would have Alz.

People can be radically unhealthy, and still their brain no have turned on the self destruct sequence.  And people can be very healthy, and the self destruct sequence is on. 

So, while I no opposed the possibility, I also highly doubt that it as simple as eat some pot brownies with raspberries on them.  I think there probably a little more it than that. 

And I sorry be blunt, but the reality is...IF we had already found the way, it would already be cured....and it is not currently cured, so nothing we have done thus far is it.  

In order find the answer...one will have be willing get outside of the boxes being given us...and start really looking at the problem and applying logic and critical reasoning it.

Up until now...we did no even know *what* we looking at...we were just taking shots dark....I believe, now we know EXACTLY *what* we looking at...which why I so excited...because this is literally HUGE.

All I saying, this guy have a critical piece solve this puzzle.

And as often is in life, each person have their magic...their one magical song...and it make, unfortunately, only one piece the greater pie.  Each of those people, however, often fall in the trap of their ego, think because they have this magic piece that they can stretch it and make the whole pie....and invariably, they all try (whatever walk of life, it always happen, you can count on it like clockwork)...and, of course, when they do claim it the whole pie then the magic fall apart...because it not the whole pie, it was always only one piece the pie.  IF, however, we could take just the one piece...that the magic piece....and put it with all the other pieces....wha-laa, you have the answer!  

And I truly do get the way we do this world...the desire fame, fortune, make a name you self (all the things people give up heaven for) that he doing...I get that. 

But I also get what have take place in the heart a person allow all the others suffer die when you holding magic sauce save them...so I know, IF he had the exact recipe all people, he would no be withhold it in the way he was.  He might have withheld it, he just would have differently.  So that tell me something also.

But that does in no way negate...that he found the pathway....and that was no small feat.  Nor is it a small contribution. 

From here, it should be easy street solve.  I mean, hell, we even know *what* the solution have do...simply create the condition precedent for the body naturally flip the cells back repairing and renewing themselves...in that finite, precise, area. 

He doesn't say, but I believe from the clues he hint at...his solution is solve ALL the areas decline health...which no a half bad theory either. 

I personally believe, that it will no take doing all them...but merely only a few key ones (100th monkey).  And *that* is the golden question...*which* ones?  Maybe it as simple as pot brownies and raspberries...who knows...but it would be nice open up the possibility be objective all the possibilities it might be, and why, before we cross any off the list.  Just a thought.

<3


Lane Simonian
Posted: Wednesday, January 18, 2017 10:18 AM
Joined: 12/12/2011
Posts: 5001


Well-expressed as always.  I saw an earlier version of your post and was going to respond and then it disappeared.  I was disappointed.  I think this one is even better.

Pathways are indeed critical for understanding Alzheimer's disease (or almost any disease for that matter).  The two main pathways that trigger Alzheimer's disease begin with the overactivation g protein-coupled receptors and receptor tyrsoine kinases. These receptors can be overactivated by dozens of things not just different forms of amyloid.  Thus, Bredesen is right anything from an unhealthy diet to various drugs to environmental toxins can trigger Alzheimer's disease.  The key like he says is not to focus on amyloid (especially plaques which may indeed be neuroprotective, just not neuroprotective enough), but what leads to amyloid in the first place.  And I would go a step further--it is not only important to know the triggers for the disease, but the oxidants eventually produced by those triggers and the damage that they do to the brain.  As the disease progresses, it is not so much the initial triggers(in part because these triggers eventually damage the receptors they initially overactivated), but their end product that is the problem.

Nitro-oxidative stress in Alzheimer's disease prevents the synthesis and release of neurotransmitters needed for the retrieval of short-term memory, smell, sleep, social recognition, balanced mood, and alertness.  It prevents the regeneration of neurons in the hippocampus and it kills brain cells.  Reverse this damage and you partially reverse Alzheimer's disease.

I don't have the whole pie either; no one does.  My goal is to find those compounds that reverse the damage done to the brain by oxidation and nitration.  After twelve years of studying this disease, I know what I am looking for.  But the pieces I am missing are still out there (or at least I hope they are).  I know ways to improve object recognition, social recognition, alertness, sleep, and reduce delusions and that those improvements can be maintained for years (until someone dies from another cause).  But I don't know how to bring about dramatic improvements in short-term memory and lucidity--may be because these partially occur outside the hippocampus and are more difficult to reach with antioxidants or maybe because they are affected by something other than nitro-oxidative stress.  I seem to be at the end of what the evidence will allow me to extrapolate and do not have the imagination to go beyond the clues that I have been given.  Each day though I wake up thinking this will be the day that I will be given the final clues that I need.



The_Sun_Still_Rises
Posted: Friday, January 20, 2017 12:11 PM
Joined: 7/24/2015
Posts: 3020


I was very glad for this post when I read it the other day, Lane.  Thank you for responding because I understand your part in all this much better.  Unfortunately, my brain been taking a bit of a dive....I have been meaning respond....and did no want you think I had forgotten. 

I would be real interested us working on this gether.  I think we on something here. 

Thank you thank you thank you.<3


Lane Simonian
Posted: Friday, January 20, 2017 12:32 PM
Joined: 12/12/2011
Posts: 5001


Thank you for your response, too, Sun.  I suppose we all feel that we are misunderstood sometimes.

I think that we understand the pathways that lead to Alzheimer's disease, we know many of the factors that lead to Alzheimer's disease, and we know some of the approaches that may slow down the progression of the disease and in some cases perhaps partially reverse it.  What is missing is not so much the general approach, but the specific treatments that work most effectively.  If you combine the best specific treatments that are currently available maybe that is the starting point until more is discovered later.


The_Sun_Still_Rises
Posted: Monday, January 23, 2017 4:47 PM
Joined: 7/24/2015
Posts: 3020


Here a link, that includes his small study.  BlueSkies had mentioned in another thread that it would be nice we had money do research....but....as I now see, this guy's protocol no so hard or bad....and all things most everyone agree is good us.  We could run our own...see.

He did study of 10...many dropped out, but had improved enough go back work, only 1 in 10 did not improve....so that 9 in 10 chance for POSSIBLE....pretty good.

https://www.sciencedaily.com/releases/2012/09/120926110110.htm

including:

  • eliminating all simple carbohydrates, gluten and processed food from her diet, and eating more vegetables, fruits and non-farmed fish
  • meditating twice a day and beginning yoga to reduce stress
  • sleeping seven to eight hours per night, up from four to five
  • taking melatonin, methylcobalamin, vitamin D3, fish oil and coenzyme Q10 each day
  • optimizing oral hygiene using an electric flosser and electric toothbrush
  • reinstating hormone replacement therapy, which had previously been discontinued
  • fasting for a minimum of 12 hours between dinner and breakfast, and for a minimum of three hours between dinner and bedtime
  • exercising for a minimum of 30 minutes, four to six days per week

Bredesen said the program’s downsides are its complexity and that the burden falls on patients and caregivers to follow it. In the study, none of the patients was able to stick to the entire protocol. Their most common complaints were the diet and lifestyle changes, and having to take multiple pills each day.

 -----------------------------

 

I know I have been a large voice for fasting....as when the liver does no have process food we eat, it can clean and balance our body (and is why we say sleep so healing....it not the sleep...it because it the only time we no eat).

<3

 


Lane Simonian
Posted: Tuesday, January 24, 2017 6:05 PM
Joined: 12/12/2011
Posts: 5001


Canada, I hope that you are still here.  I am not sure if comments made here or elsewhere may have driven you from these boards.  I have known Michael for several years and he has a sense of skepticism and mild cynicism not unwarranted by various experiences.  But he is not closed-minded and is willing to research and find treatments that may help him.

I won't directly speak to harsher comments made in other places.  I myself have pointed to some limitations of the Bredesen protocol, some of which Bredesen himself has acknowledged (such as its complexity).  But I would never say it is a false science, or an alternative fact.  Each study has to be evaluated by the results that it produces, whether someone else disbelieves it or not.  Can certain results turn out to be misleading--of course that is possible, but the more one understands the pathways that lead to Alzheimer's disease, the more confidence one has that the initial results may turn out to be close to the truth.

Try not to let negative comments get you down.  



The_Sun_Still_Rises
Posted: Wednesday, January 25, 2017 8:16 AM
Joined: 7/24/2015
Posts: 3020


.Moving right along....I contacted these guys  It was no easy figure out how do.  You have been so patiently trying help me understand as my doctor and a few other doctors have been helping tell me about....but I just don't absorb the info like I would like do.  What I LIKE about the protocol is that they do some very comprehensive testing....I am all for that....because I think one should know exactly what going on in one's body, and personalize a program. 

For all the hubbub about Bredesen (which actually quite funny imho), he recommends 8 hrs sleep, meditation, exercise, balancing hormones, good diet, certain supplements....you know, the Best Practices that are ALREADY widely accepted on here.  So clearly, they never looked in him...LOL.  Idiots.  Small minded and closed minded people will always object.

That said, people newly dx'd are going through perhaps the HARDEST time their lives...when they come here, they real need a "soft place land" and no be target of egos wanting shred them because they not aware the teeny tiny box of acceptable conversation here or forced watch as egos target and try shred someone else for coloring outside the lines.  That the opposite of "soft place land"....

....that said, you can always tell the difference between those who have it and those who don't....because when you terminal, it unlocks a whole new room awareness inside you that you no privy before.  It change you.  It why people with terminal dx's can talk casually about death, exiting, and suicide because they have clear understanding the differences....where those who are NOT terminal don't get that and they get all kinds uncomfortable. 

You can also tell those who don't have it....because they didn't understand her efforts want try find *something*...another perspective that opens up when you dx'd terminal. 

And you can tell those who support us and who get it....from those who don't.

It always so surprising me here the lack of LIFE in this place....that I feel like I am such a rebel inciting a revolution of....hey, you know what, it possible no only LIVE with dementia, it fucking possible truly THRIVE!   We really CAN re-wire our brains stay do tasks...long after everyone give up.  And there ARE ways support us stay do tasks.  And, we have just as much chance (and far more motivation) solve this for ourselves as anyone.

You know, I say SHUT THE FRONT DOOR people who think I should go home and die.  I no dead yet....and as long as there a fighting chance, I am going take it....I am no only going take it, I am going run full on at it....SHUT THE FRONT DOOR if that bothers you....go take you antipsychs and get you affairs in order, and leave me the fuck alone!  I actually have things live for...people who NEED me....I have NO TIME sit around wait die.  I got things do.  So, I am going do all kinds color outside the lines of the teeny tiny box.

But yes....this thread would be EXACTLY how we do NOT support people who have Young Onset.  Just one of the many ways. 

She was gone before you came around, Lane.

<3


julielarson
Posted: Wednesday, January 25, 2017 9:07 AM
Joined: 9/30/2015
Posts: 1155


Stop this! it is not helping any of us!
BlueSkies
Posted: Wednesday, January 25, 2017 9:18 AM
Joined: 2/24/2016
Posts: 1096


Sun, 

I need to say something to you and I want you to know I only say this out of love for you and the knowledge of the pain and suffering you are experiencing dealing with this illness.  

There are so many things to be upset and angry about with this illness, but being angry at each other is not what we want to do here.  Attacking each other and saying things like fuck you to people is really not the way to go.  That kind of behavior and talk is what runs people off the boards.  It will definitely not help your case or bring about change.

I seriously thought about leaving these boards myself because of all the bickering going on, but this is where I want to be.  I like the people on here and even though we don't always agree we still respect and genuinely care about each other.  I believe they care about you too.  I just think they have a different perspective than you, that's all.  It's okay to say your views as Lane does, but when you start useing the kind of language you are using now it just makes people want to stay away.  

So I say out of love and concern for you and the boards here, please tone it down some and just realize that everyone has their own opinion of things and "no one" should insist on others to conform to their opinion.  

We can disagree here and still be respectful and polite to each other.

I understand where you are coming from Sun and agree with a lot of what you say.  Just don't want to see anyone getting attacked on here.  Including you.


Lane Simonian
Posted: Wednesday, January 25, 2017 11:06 AM
Joined: 12/12/2011
Posts: 5001


I am not going to chastise you Sun.  How you say things sometimes offends people, but what you say is always valuable to hear.  I am very sorry when people leave these boards. We lose the help that they can provide us and they lose the help that we can provide them.  

I should have known better myself.  Two lines of approach that seem to produce the most rancor on Alzconnected are: here are ways that you can better treat people with dementia and here are natural products or techniques (diet, antioxidants, music, art, meditation, fasting, etc.) that potentially can be used to treat dementia.  The reaction is always quite defensive: who are you to tell me that I am not taking care of my loved one in the best way possible and who are you to tell me that there are existing treatments that may give my loved one a better quality of life.  I suppose no one likes unsolicited advice even when it is meant to be helpful.  And the more a person tries to explain the more upset the person hearing the advice gets.

This place always seems to find an equilibrium again but along the way many fine people are lost to these boards.


BlueSkies
Posted: Wednesday, January 25, 2017 11:56 AM
Joined: 2/24/2016
Posts: 1096


You are so right Lane.  I always think what Sun has to share is so valuable and I hope you don't think I was chastising.  I just don't want her message to get lost in the negative tone it was going.  It is hard to not get angry and lash out, but that never solves anything and that's what I was trying to say.  And I know how frustrating it is for you Lane.  Always trying so hard to figure things out and get to the bottom of things.  Always sharing valuable information that I for one very much appreciate.  I see how you are treated, especially on the caregiver boards recently.  It's amazing how cool you stay and not get dragged into the rude commenting.  I just want Sun to be able to do the same.
Iris L.
Posted: Wednesday, January 25, 2017 12:10 PM
Joined: 12/15/2011
Posts: 17580


People are not posting because the atmosphere has taken an negative tone that is not supportive.  When a new member posts a topic does not mean that no one is interested in reading about something new.  The Bredesin protocol was discussed extensively over two and a half years ago.


Iris L.


The_Sun_Still_Rises
Posted: Wednesday, January 25, 2017 12:18 PM
Joined: 7/24/2015
Posts: 3020


I hear you Lane and BlueSkies, and I agree....wholeheartedly, in fact.  And it is also my position.  My heart yours, I received you message the spirit you intended it.  However, what I said was no directed at anyone in particular....but rather the forces that would tell us go home and die.  It the same as saying, SHUT THE FRONT DOOR Alzheimer's....you will no take me that easily!  <--- And I have a right feel that way.   I even have a right lose my cool...because SHUT THE FRONT DOOR I'm dying! 

Michael's response on here is the reason She left, his negative response her....rather than SUPPORT her in trying find an answer for herself....which she have a right do.   Or, rather than simply state his opinion and move on...he feel he need shut her down, acting like he know more than all the doctors in this field. 

It all the ways that we can NOT let people have DIFFERENT points of view on here....or attack them for feel different than the narrow groupthink.  The box of what acceptable on here have gotten sooo sooooo small....that people can no color inside the lines anymore.  If people so small and weak that they need attack a dying girl.....if that is what it takes get them off...by all means, do you worst. 

https://www.youtube.com/watch?v=eYhH7AdwnAQ

 Because if you don't think you haven't ALREADY rubbed my nose 1000x in how much you think I am a piece of shit - you wrong, you have.  YOUR MESSGE HAS BEEN HEARD LOUD AND CLEAR!  And....you are RIGHT, I AM the absolute WORST piece of shit ever walk this planet...and I do no deserve the air I breathe...GOT IT!  Clearly, the universe agrees as it gave Alzheimer's and is killing me.  But if, for whatever reason, you don't feel that I have got you message deep ENOUGH, by all means - KEEP telling me.  

It SICK beyond belief the thread the caregiver section ATTACKING new members on here!   And while I get that Michael, in his ego, going use that turn it on ME (because he KNOW that I will always jump in defend the underdog - in the SAME way I once did him)....in order throw me under in an effort make himself seem important and try elevate himself - HE the reason she no here. HE did that.  And everyone else, let it happen.  I cannot NOT-SEE that.  What seen can no be unseen. 

And everyone going have a spectrum of acceptance that....some going think it a perfectly acceptable loss lose the new members, and others are going be like that was no ok at all....and everyone else will be in varying places along that spectrum with it.  <--- That OK also. 

I have a RIGHT try find an answer.  And I have a RIGHT share it.  I have a RIGHT talk with Lane.  Lane have a RIGHT talk with me.  IF YOU ARE NOT INTERESTED IN THE CONVERSATION, OR DO NOT HAVE SOMETHING HELPFUL OR SUPPORTIVE ADD....WALK ON BY....like NORMAL people do.  But STOP using the difference of view points ATTACK PEOPLE....it NOT OK. <--- That like publically making fun of my granddaughter because she flap her hands.  It MIGHT BE different from you.....but it perfectly OK she do it.  And she have a RIGHT do it...and she have a RIGHT be different than you.  As do I....and as do everyone else who happen come on here.

I do NOT tell you that it NOT ok think the way you do - so why do you feel you can do that me???

IF you don't like Bredesen, just say you "opinion" and MOVE ON.  BUT...."I" am going TRY find an answer whether you like it or not.  Because I am no ready GIVE UP and GIVE IN this disease.   I am SORRY if you disagree....but I am also NOT seeking your approval.

<3


Lane Simonian
Posted: Wednesday, January 25, 2017 12:23 PM
Joined: 12/12/2011
Posts: 5001


I much appreciated your comments, BlueSkies.  There has been a frustration that has been building here for sometime that is difficult to contain.  I try to hide my frustration as best that I can, but I understand that frustration can be expressed in many different forms and that sometimes it is expressed in a way that others may rightfully but mostly wrongly take extreme offense to (not referring to anyone here).

  


Lane Simonian
Posted: Wednesday, January 25, 2017 12:41 PM
Joined: 12/12/2011
Posts: 5001


I suppose the wording goes both ways.  I try not to discourage people from trying treatments that may help.  I say that I think this may help because, or I think this part may help more that this part because, or this might not help because.  People (including Michael) have had bad experiences with companies promoting different types of treatments. On the other hand, sometimes the treatment has to be separated from the people promoting it.  Dr. Bredesen completely severed ties with Muse Labs.  I don't know the reason why. Listening to him talk though I think he has tried really hard to understand Alzheimer's disease and how to treat it.  I respect people looking for answers. I want to see their work go forward and not shut down.  We can all be wrong, but don't give up hope that some of these people may be right.  

Sometimes, we don't know how our words affect other people.  If I had known sooner, I would have encouraged Canada to stay.  


BlueSkies
Posted: Wednesday, January 25, 2017 2:27 PM
Joined: 2/24/2016
Posts: 1096


 Lane,  

you are never pushy.  You only "offer" possible alternatives" and I for one very much appreciate it.  I don't want you to ever stop offering hope.  Those who get made at you for it think you are offering "false" hope.  Which it could turn out to be, but that's why it's called hope not an answer.  When looking for answers you should look at many things and hope one will turn out helpful.   We should all have the opportunity to see for ourselves all the possible things that might help and never should we discourage another for sharing that information.  So, please keep sharing Lane.  

Sun,  

I'm so sorry things have gotten so crazy.  You have a right to be mad and I understand.  How about we all post what we want and respond to what we want and ignore negative or demeaning comments from now on.  Just don't respond to them.  Only respond to those who treat you fairly and politely.  

I feel that's what we all should do.  


The_Sun_Still_Rises
Posted: Wednesday, January 25, 2017 2:32 PM
Joined: 7/24/2015
Posts: 3020


Bredesen is actually EXTREMELY well respected in medical community, esp in the functional medicine and integrative medicine fields....as well as the field Alzheimer's research.  <---you know, the people who would actually know.

While I completely get people's fears....and even the rolls eyes at another vitamin cure all.  Again, like the example I use CG section....I personally do NOT like romance novels....I don't read them, and I certainly don't buy them.  But my mom LOVES them, she read 2 a day.  Should I share my opinion my mom???  No....because it serves absolutely NO purpose other than make my mom feel like shit.  <---- that the opposite of support.   

Likewise....you debate science with science, NOT with ad hominum.  Ad hominum is ALWAYS a fallacy of argument. 

That said, I not surprised that it went over most people's heads. 

Now that the baby dx'd autism and we are likewise told daughter and I on the spectrum as well....many things make sense me, why I categorize and process information a bit differently than most.  But again, this should be ok...as we do not all have think the same.  This make me an excellent dot connector....and because I do have some understanding the science, I am very good at picking out the important points something.  I did no think I could, and I thought I must be an idiot think the guy video know something (the negativity around here effect me that make me doubt myself)....but I was so shocked that all the well respected doctors I passed it around, all agreed that he the real deal and well regarded his field.

EVERYONE love him.  Except those small few that feel threatened by him.  And you KNOW that they feel threatened, because....they react defensively.  You do NOT put up a shield, UNLESS you feel a sword coming you way.  <---The question IS....*why* would anyone feel threatened by someone who have a solid ground the science Alzheimer's???? 

Well....maybe anyone who (in own self) imagines themselves as being smarter than everyone?  Aka EGO.  The EGO would feel VERY threatened by those who know more than them. 

The EGO an interesting entity.  I used teach, talk, write about this in my Breathe Of Freedom series.  I think in pictures....so, for me, the EGO like an 8 foot tall Rottweiler.....and, for those who FEED their ego a lot....it grow even taller....and it drag them around at the end its leash.  Indeed, if you feed it enough...it will even gobble the person up and then they talk out the belly their EGO.  And the most funny aspect the EGO...is that it demand worship, thou shalt have no dogs before me.  Our Dog An Awesome Dog...LOL.  Back then....people in my field were all about get rid the ego, as in you have kill it...but, you literally cannot get rid the ego....so I was all about dog obedience classes the ego. The ego great....but it probably NOT who you want answering the door for you.  See, the ego only have one real function....separate me from you.  Indeed, thou shalt have no dogs before it....so left unchecked, it will create all kinds division. 

So you see in Crushed's post....a dividing effort...rally support separate himself (or herself, no sure) from you.  You see M's post this thread....separating himself from those who would be interested.  <---- this pure unadulterated EGO.   It no thing personal them...just that for most my life I can remember, I just simply categorically ignore ANYTHING the ego say....as invalid on its face. 

And yes, tensions were building....because how dare I have come on here and suggest that we support each other...especially in January when we losing so many suicide right now.  And I lost my cool....but I did no direct it at anyone...I just vented, which is allowable me as a caregiver my mom.  <--- I am evoking my CG sacred cow privilege vent.

Meanwhile....Canada was already gone before you came this thread, Lane.  I was hoping if she was still around she'd see our excitement and interest and return.  But I also completely understand.  I am sure Canada would have appreciated our interest. 

That said, I doubt that they are done yet, dogs rarely let go bones...so you might want pop some popcorn. 

I am sorry if my swears upset anyone....I have Alz....and at this point, it about all that my brain think in.

<3


Canada111
Posted: Wednesday, January 25, 2017 9:32 PM
Joined: 8/22/2016
Posts: 263


Lane, Can you elucidate about feru-guard (ferulic acid from Angelica archangelica and rice bran oil) for neuropsychiatric disease and symptoms?

Thanks very much!

Lane Simonian
Posted: Wednesday, January 25, 2017 10:58 PM
Joined: 12/12/2011
Posts: 5001


Good you are still here, Canada.  High levels of norepinephrine are associated with neuropsychiatric problems in Alzheimer's dementia. Among the factors that increase norepinephrine levels are stressful situations (being in a hospital or being moved to a "nursing home", for instance).

"Neurobiologic studies in the clinic and in postmortem brain tissue suggest that enhanced responsiveness to norepinephrine (NE) at the alpha-1 adrenoreceptor (AR) may contribute to the pathophysiology of dementia-related agitation and aggression."

I began looking for ways in which ferulic acid counteracts the effects of norepinephrine and found exactly one article:

A Highly Selective 1-Adrenergic Blocker with Partial 2-Agonist Activity Derived from Ferulic Acid, an Active Component of Ligusticum wallichii Franch

Initial studies suggest that ferulic acid works quite well in the treatment of neuropsychiatric problems in Alzheimer's disease, dementia with Lewy bodies, and frontotemporal lobe dementia and that it may at least slow down cognitive decline.  But the manufacturer (Glovia in Japan) says it is only available through medical institutions.  The best contact information that I have is:

Public contact Name of contact person Shinya Yamamoto Organization Glovia Co., Ltd.Division name Department of clinical research Address 2-9-6-7F Shinkawa Chuo-ku Tokyo TEL03-6228-3376 Homepage URL Email yamamoto@glovia.co.jp



Canada111
Posted: Wednesday, January 25, 2017 11:31 PM
Joined: 8/22/2016
Posts: 263


Wow! 

 
First of all the assumption that I have left the forum because of the consternation about Dr, Bredesen is incorrect. I am in the midst of neurological testing and have been beyond stressed (neurologist #2 ordered Volumetric MRI at the end of the week before last, and an FDG PET CT last Friday - with more radiation - ugh!!-  after the first Spect scan in October ordered by neurologist #1), and I have been experiencing tremendous tremendous fatigue, and a host of physical and cognitive symptoms. SO it behooves everyone to not take things out of context, or personally, and assume a member's absence is because of something someone says. It was not the case at all. 

As far as Dr. Bredesen is concerned I have done more research and, continue to read about his protocols, and not all of what I unearth it is so positive. 
 
I can't disagree with Michael that profiteering is a big motivating factor in the hunt for hope and a cure for this disease. Clearly the profiteering is rampant within conventional as well as integrative medicine. Money drives everything, and who is pocketing the donations for Alz research in it's entirety? There is a big beaurocratic Alzheimer's business model with a feeding chain that in my opinion has nothing to with those of us suffering with decline. (Wasn't this the case with AIDS when thousands and thousands were dying of the disease in the 80's? Finally there are drugs that keep people well longer. It took over 20-30 years to develop protocols to keep people healthier and alive longer).  
 
What alarmed me in my research on Bredesen was the number of lawsuits against him (not Alz related) where treatments he authorized were damaging, as was the case with one man who had severe sleep apnea and was advised to have among other things chelation for aluminum. The man actually required surgery to open his air passages so that he would not stop breathing 27 times an hour during sleep. The surgery cured him. After the surgery he was  able to sleep for over 7 hours for the first time in many years, and his energy and health were restored. As it turned out Bredesen's treatments were harmful to him, at least that's what the lawsuit claimed. 

Of course we want hope that may keep us in the early stages as long as possible. 

I so appreciate the information on best practices and much of what Lane and Alz+ have found to be helpful for them. 

I apologize if my absence from the forum caused this consternation and bickering and that I did not see this sooner to comment.

 If any of you are seriously interested in investigating undergoing the Bredesen program in NYC for possible inclusion in undergoing his protocol, please message me privately for further discussion. 

 

Canada111
Posted: Wednesday, January 25, 2017 11:35 PM
Joined: 8/22/2016
Posts: 263


Lane, Are you using this yourself? Thank you so very much for sharing this info.
The_Sun_Still_Rises
Posted: Thursday, January 26, 2017 7:20 AM
Joined: 7/24/2015
Posts: 3020


Welcome back Canada111, glad you feeling better. 

I have contacted them and I will be checking it out. 

Re chelation...yes, that was a big fad integrative doctors for a while, and it (thanks those lawsuits and Bredesen subsequently getting the word out there other doctors), no longer as widely recommended people. 

Indeed, I always know which integrative doctors trust by whether they suggest my issue might be heavy metals and need chelation - I run from them. 

For some reason this stuff not widely talked about on this forum....unlike all the other health related forums I have participated in, where we all talk about tests get and lab results, etc. 

Anyways, glad you back.

Sorry, I guess I was wrong, and people can continue be dicks each other on here...I will just figure out how care less.  Probably a good practice anyways as the world in an uproar around us.

<3